Saturday, June 19, 2010

Hurrah! GP check yesterday, and my blood pressure is down again! It is now 124/86 which is much more normal for me. Normally, they increase the dose of Perindopril from the 2mg a day that I am on at the moment, to 16mg for it to do what it needs to do. But doc has left me on 2mg until next Friday's check as he doesn't want my BP to go too low - it's almost as bad as it being too high as I'd feel tired all the time.

Was a bit annoyed at the surgery as I had an 8.30am appointment and expected to be straight in and out and then Greg and I could get to work. Even going at that time would make us late at work. However, some bossy mother had brought her teenage daughter in and wheedled the receptionist to allow her to have "a quick chat" with the doctor ahead of the drop in clinic starting. This quick chat turned into the doctor doing a procedure on the daughter (don't ask me what!!) and using the nurses treatment room, which I was supposed to be in for my appointment! So the whole thing to 30 minutes longer than it should have done and G and I were both really later for work. Grrrr. Its not as if I haven't already missed enough of work in the last 9 months, is it? I know, I know, I have the best excuse possible, but that doesn't mean I don't feel guilty about not pulling my weight at work.

Monday, June 14, 2010

On Friday, I came home to find I had been scheduled with an appointment for Dr Iqbal today, down at Velindre. So off I toddled, not really knowing what it was for but hoping it was to help answer the questions about what exercise I could do following the heart scan result. I had called Michelle - who, bless her, knew everything about my latest results even though I haven't seen her for ages - on Thursday to ask whether I could walk or run and continue with some kind of exercise.

I have been put on Perindopril, an ACE inhibitor under the supervision of the GP. He explained what it was all about: the Herceptin seems to cause the heart to swell, which reduces the amount of space inside it for blood, which is why the % rate is lowered and your blood pressure is higher. The body reacts by trying to make the heart bigger, which just exacerbates the problem, so the drug should reduce the swelling and allow it to go back to normal. My BP today was 141/91 (my worst result EVER!), and I will go back on Friday for a further check, and again the following Friday. They up the dosage each time, if the result is right (although I'm not sure what the right result will be!).

Dr Iqbal will be booking me another MUGA heart scan at the end of July, and an appointment with him on 27th July to see if I can go back on the herceptin. Fingers crossed!

He will also write to Mr Ghosh, the surgeon, to discuss my follow up and mammogram, which will be due in September.

I like Dr Iqbal - I feel he champions my cause, but you do have to make sure you tie him down to get answers as he darts around doing various things all the time! He went off to phone my GP in the middle of my consultation, getting the new prescription sorted out! But at least you know stuff gets done, and the GP was all sorted with my prescription by the time I had driven from Cardiff to Monmouth, which was great.

I missed a half day at work, but at least I got it sorted!

You'll be thrilled to know that I am allowed to Walk my Walk on 4th July (don't forget to donate, if you've been meaning to but haven't got around to it!) and to swim, but just not allowed to run fast - which I am incapable of anyway! Basically, take it steady and don't overdo things.

I will also not be drinking for the next month or so (well, maybe the odd ONE drink of an evening), which Greg is thrilled about as I can be the designated driver on England footy game nights! We went out last Saturday, and Luke narrowly avoided causing a fight - luckily a scrap over on the other side of the pub was a good distraction! Table service (supposed to be provided along with our table booking, burger and beer) wasn't forthcoming, so Greg managed to negotiate two free rounds of drinks! At least we got something from the night, even if the England team only managed to salvage one point... Lets see what Friday brings!

Tuesday, June 8, 2010

I chat on some online forums with other breast cancer patients and find it helpful to get reassurance, information, feel like you're not the only one going through this stuff (which sadly, we are very much not).

I get a few private messages every now and then from some lovely ladies who tell me that they appreciate my outlook, attitude and find me an 'inspiration'.

Now, don't get me wrong, I am really pleased that they find what I write supportive and helpful. I hope, if nothing else, to show that all is not doom and gloom after that initial scary diagnosis, that the journey is a road that can be travelled without the worst happening to you, that some semblance of normality can continue throughout and afterwards (am I at the afterwards yet? More or less, I suppose!).

But I really don't want to feel responsible for anyone elses emotional journey. I'm having a down day, and I don't want to feel inhibited about expressing that. I know that I will bounce back pretty quick, but I have to be 'allowed' my down days and not feel that I have to keep up a cheerful front for anyone else's sake. And I don't. I won't.

To anyone reading this going through the same/similar, all I can advise is go with it. Feel what you feel. Allow yourself. Don't expect the worst or the best, but don't imagine the worst either. Flow.

I cried on the doctor and the nurse today. I phoned Greg and cried down the phone at him. I sulked on the phone to my parents this evening. But tomorrow I will gather myself up, be grateful that things are not a lot worse, and get on with life. What else is there to do?

As reported yesterday, today I had an appointment with the oncologist. Dr Iqbal is at a conference in America so I saw another lady, very nice, but not one I have seen before. I also did not know the breast cancer nurse who was in attendance, which is a shame as Michelle - the regular nurse - is so lovely and I feel so much more of a connection with her. Today's appointment was apparently to follow up on Herceptin treatment and to consider the results of last week's MUGA heart scan.

And the results? Not good. :-(

February's result was 59% (blood being ejected through the left ventricle with each heart beat), and this time it was 44% - and therefore they have suspended my Herceptin treatment for the moment. She said that I would be referred on to a cardiologist just to be on the safe side, as my blood pressure is also higher than usual. I mentioned that last week it was 133/56, and today it was 135/90. I am normally consistent at 120/70 or thereabouts.

I will probably be recalled for a further heart scan in 2-3 months time and they'll then see whether I can be put back onto the Herceptin.

I have to admit, I fell slightly to pieces at this news. Possibly the thought that I was having every treatment possible is one of the things that has been keeping me going. That one of my 'just in case' treatments will be withdrawn/curtailed, I feel like an insurance policy has been invalidated. I want everything they have got to be thrown at this cancer.

I have been reassured that the Tamoxifen will do its job (reducing the risk of recurrence) and that Herceptin is just an 'extra' and not entirely proven, but if that were the case, why would they even bother with it? I'm not stupid... However, I am taking heart in the knowledge that there is a current trial looking at whether 6 months of Herceptin is enough, and that a full year doesn't actually give any significant benefit. These trials take years to run and apparently they are finding it hard to recruit to this one (who is truly willing to take the chance on fewer treatments if the trial shows it isn't enough?). Lets hope it shows that it is enough. I may yet get put back on it, if, after 2-3 months a further scan shows that my heart has recovered.

I know this is quite common, but I just feel so disappointed.

I am hoping that me having started running again won't have contributed - surely me getting fitter should help my heart, not push it too far? Mum and Dad (hello!) want me to cancel walking the 13 mile walk. I will talk to my GP tomorrow about it, and will ask the cardiologist when I get the referral through, but I honestly feel absolutely fine and don't think that my heart is seriously damaged - just slightly more compromised than normal. If I had only 6% higher reading, I would be within the 'normal' range.

The only benefit I can see at the moment is that the appointments won't get in the way of work and other commitments! Hhmmmmm.

Monday, June 7, 2010

Don't worry, I'm not depressed. But according to one work colleague she is amazed that I am not, and seems to be waiting for it to hit me! I won't say who it is that has said to me "But aren't you depressed?" because she really does mean well and is a lovely person, but lets just say in her job, she ought to know better than to say things like that! No. I'm not depressed. I am thrilled to be alive and well.

I am so alive and well that I have started running again. I am on 'lesson 4' of the Running Trainer 5k program that I'm following on my iPhone - totally started from scratch, and I very much need to. It's a 'run one minute, walk one minute, run 2 minutes, walk 2 minutes etc' program, and it is hard going, which shows that I have gone back to zero fitness through all of this. But I will get it back again, and at the moment I am enjoying trying!

She also said to me that I must talk to X, another person at work who has recently had a lot of time off due to cancer treatment but is now back at work (who, like me, is looking so well and so tanned! [said as if we shouldn't be allowed in the sun, should be locked inside hiding under a duvet watching daytime TV!]). I was aware of this person, but I don't know her, so we should get to together to talk about cancer? Hmm, fun. Sorry, but if I get together with her it will be to talk about books, journals, how I can support her teaching. She has probably been made to feel like a malingerer because she tooks some months off, whereas I didn't. I have been fortunate (although, as Richard Hammond said on the programme about head injury with Stirling Moss, on BBC Four last night, exactly how 'lucky' is it to get thrown from a car at 200mph and land on your head?) not to have been terribly unwell throughout the treatment, but I know it makes some people very sick indeed and they are not malingering!

Everyone also says to me, that surely my positive attitude has something to do with it? I am not convinced it really does. Every time I have started a new treatment, I have sat back to wait for the side effects to hit. And they haven't, or at least, not that hard. But I was expecting them, I wasn't ignoring them. I wasn't being brave or pretending to be well. I have gone with whatever my body feels.

Take last saturday, for instance. We went over to Greg's house (yes, he still hasn't called a plumber to arrange to get central heating fitted, I know, I know) to tidy up the garden and my back got sore from bending too much whilst weeding. I didn't feel very hungry, my back hurt, I fell asleep in the car on the way home. I went to bed for over an hour when I got home. I don't often nap in the afternoon, but I really properly slept. I didn't feel so well on Sunday and didn't eat much again - I think I must have been fighting off the stomach bug that hit Greg a week ago. So, I didn't feel well and I stopped doing anything, I rested. And I am better now. See, I do listen to my body, and it looks after me.

The good thing is, I have lost a couple more lbs, so I am heading back to my pre-chemo weight! Yay!!!

That's my rant for the day over with. Tomorrow, I have an appointment with Dr Iqbal.I am expecting to find out about my follow-up regime, and want to ask about timescales for reconstruction ops. I am doing stomach crunches in case the TRAM flap is a sensible option for me - you need decent stomach muscles but get a tummy tuck as well as a new boob! Not entirely sure about the pros and cons of the various types of operation they do yet, but would like to have choices!

Friday, June 4, 2010

Yes, go on, admit it. You thought I was all done and dusted, didn't you? Chemo is done. Radiotherapy is done. Yeah, Ok, so I'll be on Tamoxifen for at least 5 years but that doesn't count, does it?

Well, sadly, I am not all done just yet - but I am a third of the way through my Herceptin treatments. That means I have had 6 of the 18 treatments. I still have to go to hospital to have them. I have to have a cannula in my hand and sit there for half an hour while it drips through. (and the rest of the time waiting for the nurses to be ready for me and to remove the needle at the end). Every three weeks, until next February.

The good bit is that there aren't any immediate side effects, so I walk in, get it done, walk out and then forget about it again for another three weeks until I go "Oh! That time again!" and off we go.

It feels good to be a third of the way through, it feels like progress. The 6th was delivered last Wednesday.

Today, I had my 3rd MUGA heart scan. Just to remind you, these are to check that the Herceptin hasn't damaged the heart in any way. It checks to see how much blood is pumping through. This time, the needles didn't want to go into my elbow, so one went into my hand (you have two: tin and radioactive fluid). And then, under scan, the tin was all staying in my arm instead of heading to my heart to show up under in the picture! I had to hold it above my head to give it a bit of help! They also took my blood pressure this time - they don't normally - and it was 133/56 which seems a bit odd (as far as my very limited knowledge tells me, the first number is on the higher side, and the second on the lower side - so maybe that means I am normal?) To be honest, I think there probably was some 'white coat hypertension' going on as they took it just after messing about with needles, so I was probably a wee bit tense!

Results next week, when I see Dr Iqbal on Tuesday.

I keep getting asked whether I have had the "All Clear" yet. So will you allow me to educate you on that one? There is No. Such. Thing. I am learning this as I progress. There is only 'No Evidence of Disease', apparently. I will always live with the worry that it will come back - same place, other boob, somewhere else, and I have to hope that it doesn't. My cancer was gone immediately that I had surgery, so if you like I was 'all clear' from that moment onwards. The chemo and the radiotherapy and the tamoxifen are just there to mop up any stray microscopic cells that might go on to settle elsewhere and multiply. We hope that it has killed them all, and that the tamoxifen keeps any loose ones at bay.

One more positive news, I have now gone out in public a few times without any hat or wig. The wig got ditched about two weeks ago when I had a moment on a Monday morning where I was dreading having to put it on for work. So I didn't. I wore my hat instead. This week has been so hot, and my hair is thinly coming along, so I have gone bare. My grey hair looks very distinguished (I like to think)! I took some photos last week (click the photo to see the slideshow), but it has grown a little since then.

I've also got some more eyebrow and eyelash growth, and whilst camping last week, Verity (a former professional make-up artist) gave me a lesson in how to make up my eyes as I have hated them looking kinda 'blank'. It is definitely helping, and I am feeling a bit more like 'me' everyday.

We've had this week off work and have done: Westermill camping (Friday to Monday, including Greg being very sick on Sunday night/Monday) - ; visit to Exeter; Herceptin and sorting out camping gear; trip to St Davids; heart scan and visit to Cardiff city/Bay and house/car cleaning). Tomorrow, we are off to Greg's house to tidy it up a bit, and Sunday...? Sleep probably! Back to work on Monday...